Rob Hagendijk

Science and democracy : making knowledge and making power in the biosciences and beyond

In the life sciences and beyond, new developments in science and technology and the creation of new social orders go hand in hand. In short, science and society are simultaneously and reciprocally coproduced and changed. Scientific research not only produces new knowledge and technological systems but also constitutes new forms of expertise and contributes to the emergence of new modes of living and new forms of exchange. These dynamic processes are tightly connected to significant redistributions of wealth and power, and they sometimes threaten and sometimes enhance democracy. Understanding these phenomena poses important intellectual and normative challenges: neither traditional social sciences nor prevailing modes of democratic governance have fully grappled with the deep and growing significance of knowledge-making in twenty-first century politics and markets. Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work.

Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks

A call from the EU for the set-up of European Reference Networks (ERNs) is expected to be launched in the first quarter of 2016. ERNs are intended to improve the care for patients with low prevalent or rare diseases throughout the EU by, among other things, facilitating the pooling and exchange of experience and knowledge and the development of protocols and guidelines. In the past, for example where costly orphan drugs have been concerned, industry has played an important role in facilitating consensus meetings and publication of guidelines. The ERNs should provide a unique opportunity for healthcare professionals and patients to lead these activities in an independent way. However, currently costs for networking activities are not to be covered by EU funds and alternative sources of funding are being explored. There is growing concern that any involvement of the industry in the funding of ERNs and their core activities may create a risk of undue influence. To date, the European Commission has not been explicit in how industry will be engaged in ERNs. We believe that public funding and a conflict of interest policy are needed at the level of the ERNs, Centers of Expertise (CEs), healthcare professionals and patient organizations with the aim of maintaining scientific integrity and independence. Specific attention is needed where it concerns the development of clinical practice guidelines. A proposal for a conflict of interest policy is presented, which may support the development of a framework to facilitate collaboration, safeguard professional integrity and to establish and maintain public acceptability and trust among patients, their organizations and the general public.

Equal before the law: on the machinery of sameness in forensic DNA practice

The social and legal implications of forensic DNA are paramount. For this reason, forensic DNA enjoys ample attention from legal, bioethics, and science and technology studies scholars. This article contributes to the scholarship by focusing on the neglected issue of sameness. We investigate a forensic courtroom case which started in the early ’90s and focus on three modes of making similarities: (1) creating equality before the law, (2) making identity, and (3) establishing standards. We argue that equality before the law is not merely a principle but a practice. In the context of DNA research, equality refers to using standardized technology and procedures to identify the criminal suspect. Our case shows the work at stake in introducing a new technology into the courtroom and serves as a lens, magnifying how contingencies and uncertainties are managed and ordered in everyday court practices to arrive at an equal treatment of the suspect.

Post-authorisation assessment of orphan drugs

The EU regulation of orphan drugs has promoted the development of new treatments for rare disorders.1 However, the high cost of most orphan drugs threatens the sustainability of public health care. Unfortunately, the effectiveness of treatment is often unclear for part, if not all, of the patient population, especially for patients with very rare diseases, such as inherited metabolic disorders. We believe that the system of post-authorisation assessment for orphan drugs needs to be reformed to address these problems.

Aquatic ecology in The Netherlands: What is being done by whom?

SummaryAbout one third of the Dutch environmental research is concentrated on aquatic problems. The largest number of these projects is physicochemical (65%) and 47% of the aquatic projects contains an ecological component. The aquatic research projects are executed in a large number of different research institutes. Many institutes just formulated one project (43.2%) and about 10% of the institutes formulated ≥10 projects. The institutes with 10 or more projects account for almost 50% of the total number of projects. However, the size of the research projects with respect to the average total personnel per year may differ considerably. The largest number of aquatic research projects is carried out in governmental institutes. This relative high share of governmental institutes has proportionally increased during the period of 1975–1982. During this period the relative shares of all the aquatic research projects with an ecological component, of the strictly ecological projects and of the ecological/physicochemical projects have also proportionally inclined. However, in absolute numbers there seems to be a decline of both ecological and non-ecological projects on aquatic problems.

Actor-netwerk theorie, materiële semiotiek en de Nederlandse sociologie

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